Thankful to be breathing new life

 

On Thanksgiving Day 2011, the Nacks found hope.

It came in an email—from Iowa.

For Dennis Nack of Nelson, Minn., the previous two decades had not been easy. Since his mid-40s, his health had been in a slow, steady decline. He’d spent nearly 20 years working with industrial chemicals, inhaling noxious fumes daily. He’d also smoked for a number of years before quitting in 2011.

“He had extreme difficulty breathing when he went up and down a flight of stairs,” says Sharon Nack, who’s been married to Dennis for 47 years. “And it was getting worse.”

The Struggle

By his early 60s, Dennis had been diagnosed with chronic obstructive pulmonary disease (COPD) and living with coronary artery disease, which occurs when the arteries that supply blood to the heart become hardened and narrowed. Less blood flowing through these arteries means the heart doesn't get the blood or oxygen it needs, which can lead to severe pain (angina) or heart attack.

Dennis quit his job, realizing that he “just couldn’t handle it anymore,” he says. Over the next couple of years, there were occasional days when Dennis felt like his old self, but mostly he was constantly tired, out of breath, and discouraged. He never went anywhere without his inhaler and portable oxygen machine. Twice he was hospitalized at the county hospital in nearby Alexandria; the second time included a lengthy stay in the intensive care unit (ICU).

In summer 2011, Dennis’s doctors referred him to the University of Minnesota Medical Center in Minneapolis for tests to determine if he would qualify for a lung transplant. Following a heart catheterization procedure, his lung collapsed. His heart nearly stopped during a tube insertion, and he developed subcutaneous emphysema, in which air gets into the tissues under the skin. After two weeks in the ICU, the Nacks were devastated.

“They said, ‘Go home, call hospice. We can’t do anything for you,’” Dennis recalls. “They’d called the Mayo Clinic in Rochester too, but Rochester said no.”

Sharon notes that the Minnesota team consulted with specialists at Duke University, who also deemed Dennis too sick for a transplant because of his COPD and heart disease.

In the weeks that followed, Sharon and the Nacks’ daughter, Kerrie, approached other medical centers, to no avail.

“Chicago said no. Three hospitals in Wisconsin said no,” Sharon says.

The family sought hospice care immediately after returning home from Minneapolis, and it was agreed that Dennis would begin hospice care in September 2011.

“It was the first Wednesday of September,” Sharon says. “The hospice nurse came at nine in the morning. At noon, she said, ‘Call the family home. He’s not going to make it.’”

Throughout the afternoon and evening, family members and friends arrived and said what they believed were last good-byes. The family’s minister gave final communion.

Around midnight, the hospice nurse went home. When she returned the next day, she was amazed to see that Dennis had made it through the night.

Dennis remained on hospice care and, with the aid of morphine and other drugs, improved to the point where he was strong enough to use a wheelchair to get around the house.

“He was improving a little bit each day,” Sharon says. “But we knew he was on borrowed time. By the following Monday, I was so exhausted. We’d been turned down so many times. I prayed: What do we do? Where should we go?”

The next day, daughter Kerrie took Sharon aside to show her an email she’d received.

“It was from the University of Iowa,” Sharon says. “They asked us to send his medical records.”

Jana Beaver, a nurse and transplant coordinator with the lung transplant program at UI Hospitals & Clinics, had responded to Kerrie’s inquiry. The request for Dennis’ medical records was only a requisite first step and not a guarantee, but for Sharon, it was a glimmer of hope.

“It was all I had to go on,” she says, “and I believe in miracles.”

Still, Sharon and Kerrie didn’t tell Dennis right away. Not until after providing additional details to Beaver and fellow nurse and transplant coordinator Abby Mack did Sharon share the news with her husband.

A few weeks later, gathered around the table for Thanksgiving dinner, Sharon asked the Nacks’ son-in-law, Bill, to read Beaver’s email to the family, which included Dennis’s 90-year-old mother.

“No one knew what to say at first,” Sharon says. “And then one of the kids asked, ‘What does this mean, Mom?’ I said, ‘It means we’re going to Iowa.’

“It was a ray of light, and we aimed right for it.”

The Facts

Determining whether a patient is placed on a lung transplant list is a detailed process that goes beyond a question of need. It requires thorough review of medical records and follow-up with the patient and family, as well as their referring physician. Private insurance, Medicare, and other financial clearances; the patient’s age and overall health, including other medical problems such as heart disease or diabetes; and even lifestyle factors such as weight or whether the patient is a smoker are important considerations.

It also requires collaboration across the multidisciplinary transplant team—pulmonary doctors and other consulting physician specialists as needed, transplant surgeons, nurses, therapists, pharmacists, social workers, and others working together with the patient and family.

Lung transplant programs across the country may differ in their criteria used to decide who is placed on a list—some programs regularly perform lung transplants on patients in their late 70s, whereas other programs would consider a patient over age 70 only under certain medical circumstances. Each program makes a determination on a case-by-case basis, given the best information available and the greatest likelihood of success.

 

 

At UI Hospitals & Clinics, the lung transplant team performs between 15 to 20 transplants each year with excellent results, notes pulmonologist Dr. Julia Klesney-Tait, assistant professor of internal medicine and medical director of the lung transplant program.

“Our program has ranked in the top five nationally for one-year survival for the past five years despite the complexity of the cases we see,” Klesney-Tait says. “Based on the most recent group of transplants reported by the Scientific Registry of Transplant Recipients, a national database, our one-year survival rate for all adult lung transplants is 89.6%, which is about six points higher than the national average.”

The Support

In late February 2012, the Nacks made the eight-hour drive from their Minnesota home to Iowa City for Dennis’s evaluation at UI Hospitals & Clinics. By deciding to go to Iowa City, the Nacks needed to remove Dennis from hospice care.

Because Dennis was too weak to make the drive sitting up, his oxygen tanks and home hospital bed were loaded into the back of the family’s van so he could make the trip somewhat comfortably. Before leaving home, Sharon told their kids the trip was an “either/or.”

“He was either coming home with new lungs or he wasn’t coming home,” she says.

For the evaluation, the UI medical team did a number of procedures, including tests to get a sense of Dennis’ coronary artery disease, a key reason he was denied a spot on a lung transplant list in Minnesota and other locations.

“We reviewed Dennis’s case carefully, looked at all the information, and also consulted with our colleagues in cardiology and thoracic surgery,” Klesney-Tait says. “Dennis was really quite sick and had been for some time, so a big question was whether we could design a pulmonary rehabilitation program to strengthen him so that he could survive such a surgery. In the end, we believed he could.”

“I remember them saying, ‘You’re not in good enough shape (for a transplant), but we’re going to put you in pulmonary rehab,’” Dennis says. “They said they’d make me strong enough for the operation and got me started right away.”

For five days a week, Dennis did 30-minute sessions on a recumbent cross-training machine. It wasn't easy—just getting into the van each day was a challenge—but the Nacks credit the pulmonary therapists for giving Dennis the motivation to keep going.

“We love those girls to death,” Sharon says.

The Nacks had relocated to Iowa City, living first in an extended-stay motel and then an apartment in Coralville, thanks to an Iowa City physician (not affiliated with the UI transplant program) who owned rental property. Having learned of the Nacks’ situation, the doctor offered a ground-floor apartment close to the hospital that was comfortable and affordable.

Dennis and Sharon also had a strong support system: daughters Kerrie, Kimberly, and Jessica; son Colton; their children’s spouses; and 11 grandchildren.

Over time, Dennis’s pulmonary function slowly improved. He still required oxygen therapy, even during his rehab sessions, but he made progress with a clear goal in mind and the expertise of his UI care team.

On May 21, 2012, Dennis was placed on a lung transplant list.

The Transplant

He was still doing pulmonary rehab in late August—six months since the initial appointment at UI Hospitals & Clinics. While Dennis felt extremely grateful to be eligible for a transplant, he began to wonder if he could hold on long enough. He even questioned whether he should receive a transplant and whether a younger patient was more deserving.

For Sharon, it had been an emotionally draining time.

“I had to keep telling myself to stay in the first dimension—taking care of Dennis and getting him what he needed,” she says. “If I started going beyond that, thinking about the family or the person who would have to die to donate the organ to save him, I had to stop myself. I wouldn’t have made it otherwise.”

On the morning of Aug. 29, Sharon called Jana Beaver, the transplant coordinator, with a question and left a message. When Dennis answered the phone a short while later, he assumed Jana was simply returning Sharon’s call.

After exchanging pleasantries, Jana asked, “Are you sitting down?”

“I remember I kind of laughed, because what else would I be doing?” Dennis says. “Matter of fact, I was lying down. She says, ‘Well, I think we’ve found a match for you.'"

“I couldn’t understand…” Dennis says, his voice breaking. He tries to continue the story but can’t get the words out.

“We had waited and hoped for so long,” Sharon explains. “He was still thinking Jana was returning my call, so when he finally got the news, it didn’t quite register.”

Dennis nods. “Those people saved my life,” he says.

 

 

Dr. Kalpaj Parekh, surgical director of the lung transplant program, performed Dennis’ bilateral lung transplantation procedure. The day-long operation went smoothly. Less than two hours after receiving two new lungs, Dennis was breathing on his own; several hours later, he was up and walking.

Dennis spent two weeks in the hospital recovering from the surgery. He was discharged on Sept. 15, but remained in Iowa City for the next couple of months for follow-up care and ongoing pulmonary therapy.

On Nov. 20—two days before Thanksgiving—Dennis and Sharon headed home for good. That evening, just as the Nacks crossed the border into Minnesota, they saw a shooting star in the sky.

“That was our ‘welcome home,’” Dennis says.

The Thanks

Thanksgiving 2012 was especially poignant for the Nacks, who a year earlier had almost given up hope of Dennis getting the transplant he needed. As the family prepares for this year’s gathering, Dennis and Sharon emphasize they will forever be grateful for the medical care—and especially the organ donation from an Iowa man in his 20s—that saved his life.

“Words can’t even say what I feel for that person and his family. How do you even begin to say thanks?” Dennis says.

Now one year since his transplant, Dennis and Sharon count themselves blessed. At age 65, “I’m never short of breath,” Dennis says, adding that he has plenty of energy to mow the yard, take the grandkids fishing, or dance with Sharon, as the couple did at their nephew’s wedding reception.

“We slow-danced to one of our favorite songs by the Righteous Brothers,” Sharon says. “At one time I thought we’d never do that again.”

“Hey, we did the Twist, too,” Dennis adds proudly.

The Nacks feel a special connection to UI Hospitals & Clinics, which is why they choose to continue make the day-long drives to Iowa City for Dennis’s follow-up care.

“From the moment we arrived, it felt right,” Sharon says. “The first person we met, she’d seen us coming and had a wheelchair out in no time. She greeted us, and we were like, ‘Wow.’”

“This whole hospital,” Dennis says, "if you stop for 30 seconds, someone will ask if they can help you. It’s unreal—the dedication, the attention to details, the friendliness. We never experienced anything but the best from everyone here.”

“And you know,” he adds with a grin, “we’re from Minnesota, so that tells you this must be a pretty special place.”